The Neverending Story

'The finest steel has to go through the hottest fire.'--John N Mitchell

We set up this website in late October for our wonderful, inquisitive, loving Aiyana. Yana is our eight year old daughter, sister, cousin, niece, friend and granddaughter who was diagnosed with an extremely rare form of leukemia (MPAL). Aiyana had an amazing life and we are filled with hundreds of heartwarming memories. May all of us take to heart how much a little girl from Lockeford, CA, impacted the world and be reminded and inspired to never let the sun go down without living each day all the way through. Her Spirit is in every Butterfly.

11.19.2009

Busy this morning with 9 quarts of chicken soup on the stove and Tater Tot Casserole in the oven, we were interrupted by an urgent summons to the hospital. Aiyana was in trouble.

Last evening we celebrated that her fever broke around 8pm. Man, we all thought we were home free but overnight she had distress breathing as a lung infection took hold, and she was moved into Pediatric ICU around midnight.

Her condition steadily worsened throughout the early part of the day and the prognosis was grim. She had an infection, a rapidly moving infection that had compromised her lungs at a time when she essentially had no white antibodies to fight it off. By the time we arrived, she was hooked up to all sorts of machines and tubes to try and stabilize her. The doctors had already exhausted the first of three treatment options and were midway through the second which was appearing ineffective.

Really long minutes ticked by as the family huddled with the Minister and her parents stepped out from time to time with updates. We paced and held hands and waited. When we were able to go in briefly to see her, she lay bloated and unconscious on the bed with her small chest vibrating from the breathing apparatus attached to her lungs. Her little heart was beating over 200 beats per minute.

And then code blue. We pasted ourselves along the walls as doctors and nurses tore past us to help the flurry of people working to resucitate her. Her mother and dad watched, hands over their mouths, shocked to be seeing what they never hoped they would. And then Aiyana came back, strong and stable, and it was decided to go for broke.

We are on the third and final option now, one used for temporary bypasses during pulmonary surgeries. Essentially the huge machine attaches to her veins and arteries and pumps blood out of her body, artificially oxygenates it and returns it to the body without using her lungs. What the doctors hope is that Aiyana's lungs will be able to rest and heal themselves. We've already been told it will get worse before it gets better. I can't imagine how much worse it can be than today.

And yet. Aiyana has defied all the odds since the day she was born. With cerebral palsy and epilepsy, her parents were told she wouldn't walk, but she runs and dances and rides her bike. They said she wouldn't talk but I dare you to stop her. Her wonderful father says: give her the chance and she will do what she's always done: defy the odds.

But a double helping of prayer will do wonders, too. Please join us every day until she is well. She needs you now more than ever.

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comments:

You bet! But God's grace brought her back. We are learning to be grateful for every single second because we can't count on automatically having them. Aiyana is a fighter, you have no idea! Sweet beyond measure, insightful and joyous. I think God has big things destined for her.

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Purple Butterfly

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Ribbons of Hope

YanaBug

Hercules

Grandma Faye and Yana

Yana's Life Miracle, as told by her big sister

I wanted to share a little bit of Aiyana's life with all of you so you understand why she is our family miracle.

March 6, 2001, Aiyana came into our lives. At one point during our Mom's pregnancy it looked like might be carrying twins. We all expected a very big baby ... and she was perfect with her dark brown curly hair and big brown eyes that were full of love, wonder and happiness. She overwhelmed our lives with joy.

She brought something out in all of us. I had been a big sister 3 times already but there was something different with her. It wasn't that I didn't love my brothers or sister, but I just wanted to be Aiyana's mommy, too.

Aiyana started to crawl and was getting very good at playing with stuff, but we noticed she didn't crawl like the rest of us: she would scoot on her bottom always on one side. Mom and Dad also noticed she wasn't utilizing her right hand when she played and it was in a tight fist. Right before her first birthday, our parents took her to the doctor and they did some tests and a catscan and discovered that more than half of the left hemisphere of her brain was empty space that had never developed. The doctors think that while she was growing in the womb Aiyana developed a blood clot that led to a massive stroke while her brain was developing.

The doctors said that Aiyana had cerebral palsy and started listing all of the things she WOULDN'T be able to do, like walk, talk, read and write ... the list went on and on. The family was crushed. I couldn't imagine my baby sister not able to run outside ... or dance ... or sing.

Physical therapy started immediately. They were teaching her sign language to communicate and all of a sudden 'daddy' and 'mommy' started coming out of her mouth, and then she walked one step, then another. And before you know it, she was running all over the house, talking, singing and dancing.

She continued to grow and continued to amaze us, each day drawing a line through the doctor's WOULDN'Ts. Because all of this occurred while her brain was developing, her brain re-wired itself to take over the undeveloped part. She got a little leg brace to strengthen it and a hand brace to keep her hand open. As time went on she continued to amaze us.

Aiyana had her first seizure about that time and it has been controlled with meds. Doctors cautioned that seizures will increase as she gets older, but again Aiyana just keeps trucking along. Eight years have passed and she excels at everything she does: riding her bike, break dancing, jumping and skipping, reading and writing. If you say CAN'T, she shows you she WILL.

Falling down doesn't keep Aiyana down, it does the opposite. She has never given up on anything she has done because she fights for it. Only God knows why things have come to this extreme point, but this spectacular girl is a miracle child and has defied all the odds.

For those of you who haven't met her, we hope it helps you see what we see, that Aiyana isn't giving up on this and every day that goes by she is showing us how to fight and keep our spirits up. We can't wait to dance with her again.